Social Control of Patient Associations and Associative Movements in the SUS: implications for governance and public health policies

Abstract

The 1988 Constitution marked Brazil's democratization by recognizing and valuing social rights, incorporating social participation
not only as state oversight but as a fundamental element of social policies. Law No. 8,142/90 established community participation in
the management of the Unified Health System (SUS), ensuring Health Conferences and Health Councils as spaces for deliberation
and social control. Associative movements, or organized coalitions of individuals, including patient organizations, have driven this participation, standing out in the mobilization for recognition and the inclusion of demands on the governmental agenda. Since 2010, there has been an increase in movements led by patients and their families, challenging the paternalistic model of care. This study aims to understand the profile of patient associations and social movements regarding forms of social participation in health across the Executive, Legislative, and Judicial branches, as well as the demands and needs to enhance this participation. This information was collected through a structured questionnaire, divided into five thematic blocks, using the Survey Monkey platform. The analysis shows that, while there is significant interest and interaction, gaps still persist in understanding interactions with the government and in identifying the needs to strengthen public policies.